T4 low, TSH rising, T3 fluctuates: I posted a few... - Thyroid UK

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T4 low, TSH rising, T3 fluctuates

Tiffin76 profile image
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I posted a few weeks ago about my ongoing battle with thyroid symptoms (hypothyroidism) and B12 and trying to get my GP to move forward with it all.

My latest (private) test results are attached. Taken at 8.30am, just water, stopped biotin a week before. My T4 is low (and dropped below range last time), my T3 fluctuates and TSH whilst in range, is steadily increasing. Has anyone got any thoughts on these results? And what the percentages are?

I have a whole host of symptoms like fatigue, puffy eyes and face, weight gain, short eyebrows, no underarm hair, cold intolerance. My biggest concern right now is the overwhelming muscle weakness in my legs. I cannot get up from kneeling and struggle to get up from sitting.

B12 had been an issue. It was down to 236 in March and I had all sorts of neuro symptoms (vertigo, visual disturbance, cold patches on legs) but they resolve if I keep my levels high (I take 1000mcg methyl a day). I have tested it out and if my levels drop below 300 my neuro symptoms come back.

Vit D and folic acid is good but my magnesium is below range. Anyone know of a good supplement?

My GP wants to do her own tests and maintains everything is ‘within range’.

I had breast cancer in 2020/21. Chemo, surgery and radiotherapy.

I know something is not right. Any thoughts appreciated.

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SlowDragon profile image
SlowDragonAdministrator

Previous post

healthunlocked.com/thyroidu...

Results show High folate

Presumably you were supplementing?

What are you using

When taking B12 we recommend a daily vitamin B complex rather than just folate

What’s your most recent vitamin D result

Are you currently taking any vitamin D supplement

If yes how much and does it include Vitamin k2

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function.

There’s a version made that also contains vitamin K2 Mk7.

One spray = 1000iu

amazon.co.uk/BetterYou-Dlux...

It’s trial and error what dose we need,

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

NHS easy postal kit vitamin D test £31 via

vitamindtest.org.uk

Low magnesium in previous test

Lots of different magnesium supplements available

Best taken early evening or bedtime as relaxing and improves sleep

If you tend towards constipation Calm Vitality Magnesium powder is cheap and easy to use. Start on low dose and increase until get desired results. Too much can cause diarrhoea

Thorne Magnesium Citramate capsules. Don’t affect bowels. Large capsules, can open and tip in to small cup of water

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Interesting article by Dr Malcolm Kendrick on magnesium

drmalcolmkendrick.org/categ...

You also need ferritin levels tested, or ideally full iron panel test including ferritin

Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test

Medichecks iron panel test

medichecks.com/products/iro...

Tiffin76 profile image
Tiffin76 in reply to SlowDragon

Thanks for the reply SlowDragon . I take 5mg of folic acid daily because I am also on methrotrexate for psoariatic arthritis which is taken one day a week - hence I'll always have a high reading.

I take Magnesium OK by Wassen which is my general B complex although that doesn't seem to help raise my magnesium levels (possibly not absorbed wel because of gut issues).

Last Vit D was in March - 134 nmol/L (range 50-200). I am good about getting 15 mins of sunshine when I can without sunscreen. I am away quite a lot. I do supplement with the Better You Vitamin D/K2 spray from September onwards. I do have gut issues as I said so I find spray or sublingual best.

Iron and ferritin results attached - seem OK but my ferritin was extremely high at one point?

My cholestrol is high too which I believe to me another hypothyroid symptom.

Blood test results
SlowDragon profile image
SlowDragonAdministrator in reply to Tiffin76

Iron and ferritin results attached - seem OK but my ferritin was extremely high at one point?

High ferritin was at same time as you had high CRP (test for inflammation)

Inflammation raises ferritin

Roughly how old are you

Post menopause, common for ferritin levels to increase

Ferritin level if over 60 years old range increases from 30-150 up to 30-600

Tiffin76 profile image
Tiffin76 in reply to SlowDragon

Oh that makes sense. I was horrendously ill in late June. Picked up an eColi infection which was in my urinary tract and my chest. Then Klebsiella. Ended up spending my week's holiday in Greece in hospital there for 4 days. My CRP went through the roof understandably so explains why the ferritin was so high then. I took a month to get better.

I'm almost 59 and post menopausal.

Tiffin76 profile image
Tiffin76 in reply to SlowDragon

Interestingly just read that article on magnesium and had a lightbulb moment - my water softener strips out magnesium! I will use the little side tap they installed which bypasses the softener.👍

TiggerMe profile image
TiggerMe

3/10/23

TSH 2.92 mIU/L (0.27 - 4.2) 67.4%

Free T4 (fT4) 0.95 pmol/L (0.93 - 1.71) 2.6%

Free T3 (fT3) 3.83 pmol/L (2.02 - 4.43) 75.1%

T4:T3 Ratio 0.248 

I'm going to put these up to bump your post, it certainly looks like you body is desperately trying to keep your fT3 up to maintain function

I'm thinking you'll need an Endo as these results won't trigger a response from a GP even when symptomatic as you obviously are 🤗

Tiffin76 profile image
Tiffin76 in reply to TiggerMe

Thank you TiggerMe - 'desperately trying to keep up' kind of describes how I feel right now. This week's symptom is puffy red eyes - can't even attempt contact lenses given how sore, scratchy and red they are. I think I just need to know that if I go the private endo route, they won't laugh me out of the room. The neuro symptoms (which my post cancer care team were worried enough about to scan me from head to foot but all clear) I had earlier in the year were dismissed by my neuro as nothing to do with B12 and were vestibular migraine but upping my B12 meant they all went away.

TiggerMe profile image
TiggerMe in reply to Tiffin76

I think GG's suggestion of putting a post up looking for Endo's that have Central Hypo experience would be a good step... don't know if that gets noted on the TUK list??

I'm glad you sorted yourself with B12 🤗 odd how 'ologists' discard the basics isn't it 😕

greygoose profile image
greygoose

Percentages:

FT3 - 71.78% - 25.73% - 75.10%

FT4 - 21.79% - -3.85% - 2.56%

So, what we have here is a classic case of Central Hypo. The TSH does not reflect the low FT4. However, the FT3 is weird, that sudden drop to 25.73%, but The FT4 also dropped, and you can see that the TSH did rise slightly for for those results. Just not enough.

Also, the FT3 should not be higher in-range than the FT4, that's not normal and shows the thyroid is failing for some reason. And, the reason, I would guess, is lack of stimulation from the pituitary. But, I don't suppose your GP has ever heard of Central Hypo, and certainly wouldn't recognise the signs. She needs educating, I'm afraid. But, first you have to learn all you can about the condition yourself. Because if she really believes that everything has to be alright if results are within the range, then she has a lot of learning to do! Ranges are just a very rough guide, and you have to know how to interpret the results in relation to each other, not as three stand-alone tests.

Central hypo is when the problem lies with the Pituitary (Secondary Hypo) or the Hypothalamus (Tertiary Hypo) rather than the thyroid itself (Primary Hypo).

The treatment is always the same: thyroid hormone replacement - usually starting off with levo (T4). But the problem is that the pituitary makes a lot of other hormones, which could also be low, so need testing. For example, it produces ATCH, which stimulates the adrenals to make cortisol. Have you ever had your cortisol tested?

So, a lot more testing needs doing, but you need a clued-up endo to do it. Not many endos have ever heard of Central Hypo, either. But, you could write another post asking people to recommend an endo that does know about it, by PM. :)

SlowDragon profile image
SlowDragonAdministrator

You’re probably unlikely to persuade GP to start Levo with TSH around 3 and no thyroid antibodies

You might get thyroid specialist endocrinologist to agree, especially with your increased in risk of developing hypothyroidism after treatment for breast cance

List of thyroid specialists and endocrinologists

healthunlocked.com/thyroidu...

But check iron/ferritin levels first ….see if they need improvement

Then retest thyroid levels again

Tips on how to do DIY finger prick test

healthunlocked.com/thyroidu...

Monitor My Health also now offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65

(Doesn’t include thyroid antibodies)

monitormyhealth.org.uk/full...

10% off code here

thyroiduk.org/getting-a-dia...

other testing to consider

Ultrasound scan of thyroid

Higher cholesterol linked to low thyroid levels

Low GFR (kidney function) linked to low thyroid levels

Tiffin76 profile image
Tiffin76 in reply to SlowDragon

SlowDragon ferritin and iron in previous response. My thyroid ultrasound last month indicated small benign colloid cysts. I do have high cholestrol at 6.49 (range 0 - 5.17 and my last eGFR in late August was below range at 64.6 (Male range: 90 - 130 Female range: 80 - 120).

This forum is so helpful at drawing all these things together - my GP doesn't hasn't even mentioned my cholestrol!

Test results
SlowDragon profile image
SlowDragonAdministrator in reply to Tiffin76

Low GFR and low thyroid

ncbi.nlm.nih.gov/pmc/articl...

The GFR is reversibly reduced (by about 40%) in more than 55% of adults with hypothyroidism[40] due to several reasons

Both these changes are reversible with treatment of hypothyroidism. Hypothyroidism also results in increased glomerular capillary permeability to proteins.[47] The consequent proteinuria often precedes the reduction in GFR in hypothyroidism

academic.oup.com/jcem/artic...

ncbi.nlm.nih.gov/pmc/articl....

In your previous post I gave you links about hypothyroidism developing after Breast cancer treatment

SlowDragon profile image
SlowDragonAdministrator

Roughly where in U.K. are you re seeing a recommend thyroid specialist endocrinologist?

Tiffin76 profile image
Tiffin76 in reply to SlowDragon

In Surrey. Not seen any specialist endocrinologists yet. Still at the battling with my GP stage. It has taken 6 months to seperate out the initial sysmptoms which were a lot to do with the low B12 and what I have now. And of course my gut which the chemo nuked. This site has given me the confidence to push for certain blood tests as well as which ones to seek out privately and push for a thyroid scan. I like Onedaytests for the trend they give you. I feel pretty comfortable now with presenting my case to a specialist (privately as I feel sure my GP is going to stick to the 'it is all within limits').

SlowDragon profile image
SlowDragonAdministrator in reply to Tiffin76

Will send you a private message re endocrinologist

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